Chronic fatigue syndrome hard to diagnose and understand
Barbara Cosgrove, of Southington, stands near the exhibit in the Westfield Meriden mall .
Posted: 17 June 2009
MERIDEN – About 20 years ago, Barbara Cosgrove was treated for a debilitating infectious illness. After a year and a half, the illness was gone, but what remained was a troubling set of worsening symptoms.
Those included migraine headaches, nausea, vomiting, muscle pain, severe fatigue and short-term memory problems.
“If anything, I got much worse, because my immune system had weakened,” said Cosgrove, a Southington resident.
A registered nurse, Cosgrove had been the director of nursing in several long-term health communities. After her illness was gone, she returned to work.
Her symptoms would come and go, with a few good weeks followed by a very bad time, and she found she could no longer work a full schedule .
“It got to the point where I was literally crawling up the stairs when I got home,” she said.
Her primary care physician was less than helpful, at one time suggesting to her husband that it was a case of severe depression.
“I’d always had an active life and my family knew that was not the case,” she said. “It wasn’t on my agenda to stay put, or to be sick.”
Eventually, an article in Newsweek magazine led her to Brigham and Women’s Hospital, in Boston, where in 1990 she was diagnosed with chronic fatigue syndrome.
“I started to read it and said, ‘This is what I think I have,’ ” she recalled.
On Tuesday, she was at the Westfield Meriden mall, in front of a display designed by the Centers for Disease Control and Prevention to promote awareness of a long-misunderstood affliction.
An estimated 4 million Americans have chronic fatigue syndrome, though less than 20 percent have been diagnosed, the CDC says.
Symptoms can be similar to those of mononucleosis, fibromyalgia, multiple sclerosis and Lyme disease. Though there’s no cure, an early diagnosis can increase the chances for improvement.
Cosgrove’s experience was fairly typical in that her chronic fatigue syndrome followed a different illness. In children, it often follows mononucleosis.
There appears to be a connection between the syndrome and viral symptoms, “we just don’t know what type,” said Dr. Morris Papernik, a Glastonbury internist who specializes in chronic fatigue syndrome.
Everybody gets tired now and then, and those with chronic fatigue syndrome often don’t look sick, so there’s been a stigma associated with the illness.
But for those with chronic fatigue syndrome, said Papernik, fatigue defies adequate rest.
“For patients with CFS, no matter how much they rest they don’t get any improvement,” he said.
A diagnosis of chronic disease syndrome is a diagnosis of exclusion, which means ruling out other possibilities. The affliction shares traits with fibromyalgia and depression.
The traveling CDC exhibit, which remains in Meriden until Saturday, is “trying to educate in general but to also educate physicians,” said Papernik.
There’s also the hope “that research will lead to a diagnostic test,” said Sara Bass, past president of the Connecticut CFIDS & FM Association. The letters stand for chronic fatigue and immune dysfunction syndrome and fibromyalgia.
Bass’ daughter was diagnosed with chronic fatigue syndrome at 14, following a bout with mononucleosis, and as a result had to be home schooled.
“If you know what you have, then you can get treatment for it with the people who know the most about it,” Bass said. “We know there are people who have recovered from CFS who have had it for years.”
Dealing with chronic fatigue syndrome comes down to managing symptoms, and because the illness can affect people differently, there’s no one-size-fits-all solution.
For Cosgrove, 63, the disorder manifests with deep muscle pain and feels like a very bad case of the flu. “I call it feeling stuporous, fully discombobulated,” she said.
She said it hasn’t always been easy on her two children or her husband, Robert Cosgrove, who was health coordinator for the town of Newington for 30 years, now retired.
Her symptoms are typically most severe in the morning and improve as the day progresses.
Over the past two decades, her approach has included vitamins, herbs and supplements, and more than a dozen immune-system-boosting injections a day. She also practices reiki and reflexology.
“Every year I get a little better,” she said.
“I’m 60 to 70 percent better since I started taking alternative medicine,” she said. “For now, it’s very tolerable.”
“I can’t stress enough how important being positive is,” she said. “I have never thought of myself as being an ill person. I think of myself as a well person who needs some things taken care of. I knew I needed to make a new life for myself within my limitations.”
More information about chronic fatigue syndrome is available from the Centers for Disease Control and Prevention online, at www.cdc.gov/cfs/.
Information about the Connecticut CFIDS & FM Association is available on the Web, at www.ct-cfids-fm.org, or by calling (800) 952-2037.
Submitted by Jeff Kurz on Wed, 06/17/2009 - 11:50
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